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Original research
Results of a healthcare transition learning collaborative for emerging adults with sickle cell disease: the ST3P-UP study transition quality improvement collaborative
  1. Ifeyinwa Osunkwo1,2,
  2. Jennifer S Cornette1,
  3. Laura Noonan3,
  4. Cheryl Courtlandt3,
  5. Sarah Mabus3,
  6. Patience H White4,
  7. Margaret McManus4,
  8. Myra M Robinson5,
  9. Michelle L Wallander1,
  10. James R Eckman6,
  11. Elna Saah7,
  12. Ofelia A Alvarez8,
  13. Mark Goodwin9,
  14. Leila Jerome Clay10,
  15. Payal Desai11,
  16. Raymona H Lawrence12
  1. 1Atrium Health Levine Cancer, Charlotte, North Carolina, USA
  2. 2Novo Nordisk Rare Disease, Zurich, Switzerland
  3. 3Center for Advancing Pediatric Excellence, Levine Children’s Hospital, Atrium Health, Charlotte, North Carolina, USA
  4. 4Got Transition, The National Alliance to Advance Adolescent Health, Washington, DC, USA
  5. 5Department of Biostatistics and Data Sciences, Atrium Health Levine Cancer, Charlotte, North Carolina, USA
  6. 6Emory University, Atlanta, Georgia, USA
  7. 7Children's Healthcare of Atlanta, Atlanta, Georgia, USA
  8. 8Pediatric Hematology, University of Miami School of Medicine, Miami, Florida, USA
  9. 9Sickle Cell Thalassemia Patients Network, New York, New York, USA
  10. 10Johns Hopkins All Children's Hospital, St Petersburg, Florida, USA
  11. 11Atrium Health Levine Cancer, Wake Forest School of Medicine, Charlotte, North Carolina, USA
  12. 12Jiann Ping Hsu College of Public Health, Georgia Southern University, Statesboro, Georgia, USA
  1. Correspondence to Dr Raymona H Lawrence; rlawrence{at}georgiasouthern.edu

Abstract

Background Individuals with sickle cell disease (SCD) experience poor clinical outcomes while transitioning from paediatric to adult care. Standards for SCD transition are needed. We established a Quality Improvement (QI) Collaborative that aimed to improve the quality of care for all young adults with SCD by establishing a standardised SCD transition process. This study evaluates the implementation of the Six Core Elements (6CE) of Health Care Transition, which was a fundamental component of the cluster-randomised Sickle Cell Trevor Thompson Transition Project (ST3P-UP) study.

Methods A central QI team trained 14 ST3P-UP study sites on QI methodologies, 6CE and Got Transition’s process measurement tool (PMT). Site-level QI teams included a transition coordinator, clinic physicians/staff, patients/parents with SCD and community representatives. Sites completed the PMT every 6 months for 54 months and monthly audits of 10 randomly-selected charts to verify readiness/self-care assessments and emergency care plans.

Results Of a possible 100, the aggregate mean (±SD) PMT score for paediatric clinics was 23.9 (±13.8) at baseline, 95.9 (±6.0) at 24 months and 98.9 (±2.1) at 54 months. The aggregate mean PMT score for adult clinics was 15.0 (±13.5) at baseline, 88.4 (±11.8) at 24 months and 95.8 (±6.8) at 54 months. The overall QI Collaborative PMT score improved by 402%. At baseline, readiness/self-care assessments were current for 38% of paediatric and 20% of adult patients; emergency care plans were current for 20% of paediatric and 3% of adult patients. Paediatric clinics had one median readiness assessment shift (76%) and four median emergency care plan shifts (65%, 77%, 79%, 84%). Adult clinics experienced three median self-care assessment shifts (58%, 63%, 70%) and two median emergency care plan shifts (57%, 70%).

Conclusions The ST3P-UP QI Collaborative successfully embedded the 6CE of Health Care Transition into routine care and increased administration of assessments and emergency care plans for transition-aged patients with SCD.

  • Quality improvement
  • Transition of Care
  • Control charts, run charts
  • Implementation science
  • Patient-centred care

Data availability statement

Data are available upon reasonable request.

https://doi.org/10.1136/bmjqs-2024-017725

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    Data availability statement

    Data are available upon reasonable request.

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    Footnotes

    • Contributors IO and RHL—funding acquisition. IO, JSC, LN, CC, SM, PHW, MM, JRE and RHL—conceptualisation and methodology. ES, OAA, MG and LJC—investigation. JSC, ES, OAA and LJC—data collection. IO, JSC, LN, CC and PD—data analysis and interpretation. MMR—statistical analysis. IO, JSC and MW wrote the original draft, with all other authors contributing refinements. All authors reviewed and approved the final manuscript. IO is the guarantor.

    • Competing interests IO received grant funding from HRSA and CDC and previously served as a consultant for Acceleron, Chiesi, Cyclerion, Emmaus, Forma Therapeutics, Global Blood Therapeutics and Novartis. PD received grant funding from CHL-Bhering, Forma, NIH, Novartis, Takeda, UPMC and UT Memphis and serves as an NMDP study monitor and Forma advisory board member. She has also consulted for Forma, Chiesi, Bluebird Bio and Vertex as an advisory member. RHL received grant funding from PCORI, served as a consultant for Novo Nordisk and Pfizer and served as a consultant for Forma Therapeutics. OAA was advisory board member of Novartis and Global Blood Therapeutics and receives grant funding from NIH, HRSA and CDC. All other authors have no relevant interests to declare.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.